I had total atrophy at dx which had not improved at A YEAR gluten-free. Celiac Doc was stumped. At two years the damage finally stopped getting worse and at three years I finally had an improved marsh scale score - while nit was still in the threes it was improved.

I don't say this to scare you - just remind you that it looks like you have likely already improved - most are all healed within a year - three months for total healing would be very quick - imo and that of my celiac doc.

Thanks gluten-free. Hope you're right, it's quite upsetting to think I am seriously damaged I have a suspicion a am damaged throughout the small bowel as I have pains in various same places. If I get irritated they hurt. I think this is the damage. I dunno, could be wrong but feel quite tuned into it.Even if I have villi wipeout in some areas it's still possible to heal isn't it?

Hi DS,

Oh yes, you can still heal. The villi are normally replaced every three days or so. It's a constant process. If they weren't replaced that often, we would all be in trouble, even non-celiac people. Especially the part right near tehstoamch is ht with stoamchaicd every day. The liver dumps nuetralizing chemicals in the gut to keep it from getting destroyed by the acid. But it's a harsh environment for cells to live in. How long it takes the body (immune system) to stop attacking the cells is the question. That can vary widely.

On the hubby, no he hasn't been back to that dr because he hasn't been having any trouble in that area. He's has gained weight and has had no pains or other bathroom issues. In fact, according to my husband, he hasn't had any D since he started the diet. He goes to his diabetic dr every three months ( or more often than that -- he has had T1D for 35 yrs) and he has had extensive blood work each time, and do far no levels of any kind have come back concerning. I don't think they check antibodies though. He has no stomach aches, no gas ( never points anymore in fact), no weird colored poop. He was told that he would heal ( it is obvious he has because he has gained weight he never gained before because he wasn't getting all the calories he needed because his food wasn't being absorbed in his intestines), but that it may be more than a year or more before he was completely healed. He is doing well--- I hope I haven't jinxed him now!

My son- he doesn't look Celiac at all!!! It really was just a chance thing that we had him tested. I could of ignored Glenn's Dr and said 'he has no problems, he's fine', but I didn't. This past summer at his 9 yr physical we ( his ped and I )decided it would be best to check him. She totally agreed that he should be checked regardless of symptoms! She spoke of lymphomas and other problems that arise from untreated celiac, so we had no problems there. His antibody level came back a 25 ( a little above where they start to get concerned-- his GI said they begin to worry at anything over 19)so we were sent to a pediatric GI. He looked at him and said... No he doesn't look celiac. My son is solid not skinny at all. He said because he has some risk factors ( my husband, blonde hair, fair skin ... There would be a chance but he said only 10%). He said that some antibody test are not accurate so he did a more extensive test. This time his levels came back at 65. It was about a month and a half later - I don't know if he ate more gluteny items before that test or just because some time had past but regardless it wasn't a good sign. They scheduled the endoscopy for a week later. That went well. I was scared or course, but it needed to be done. His pediatric GI will not do an official diagnosis without the biopsy. I was no more scared than when he had his tonsils out!! Sure enough he had silent celiac sprue( no obvious symptoms with intestinal damage). As I said the doctor was surprised. He had partial atrophy. The doctor explained the villa like this ( which is probably because he is dealing with kids- adult drs probably font feel the need to explain it as well). The villa are like little fingers. Normal villa pick up the nutrients like fingers would and andorb them into your system. Skylar's villa were "chopped" off a little so they couldn't pick up the nutrients as easily- kind of like if you chopped half your fingers off-- it would be more difficult to pick up things. Basically after that that was it. We started the gluten free diet and we are due up for our first antibody test in February. He requested that his pedatrician do an antibody test every six months for now but said unless we were having issues he would see he wouldn't need to see him again. He has done really well on the diet. He is very concerned about eating things he shouldn't ( I think the drs said cancer one too many times to him). Every once in a while he will eat a snack at his after school program that he fist realize he could have ( like lays BBQ chips) but we talk about it and he now knows those things are off limits. He is 9 and is just learning about what he can and can't have... So there will be a learning curve. He had his Christmas party at school and he are very little ( the room mom told me this) because he was so uncertain about what he really could and couldn't have. This is a good thing I guess but it still made both of us feel bad... We did have things for him, but since I wasn't there to help he didn't want to take a chance. He is a trooper and has been really mature about it. Every once in a while he'll say. I miss burgers, zaxby's , etc. but then we talk about it and what could happen and he is fine!

His symptoms-- he had no obvious ones- if he had stomach aches he didn't realize it ( he didn't know his stomach shouldn't feel that way) no stomach issues serious at least. But once we started the diet he was a bit more perky! We thought he was calming down because he was getting older. So there were symptoms just nothing we could see. There were a couple of other things though... He has ADHD( he's been on meds since he was 5) and he has asthma..., both of those things are symptoms/ side effects of celiac disease. And we recently found out that he has a possibly learning disability in reading ( another side effect) his overall iq is 118 but his reading comp and memory both scored a 92 ( 20 pt difference signals LD--- but the psy at his school doesn't diagnose with just that ( I work at a school and my psy looked at results and said that he does have one--- so right now we are just monitoring and understand that he will probably not be making A's in reading. So I find that interesting. It explains a lot possibly!!

Overall both are fine, my advice to you is to insist on the testing. It is just a blood test. They shouldn't object if they really have an understanding of the disease and its genetic capacity. If they refuse, find another dr that will agree to it. Basically I would accept no. I would go in and insist upon it! I would say I want the test! It is your right to do that. You could always stoop to their level and threaten malpractice if something should happen to your child because they refused to give you a simple test. I know that sounds terrible but whatever you need to say to get those tests done. If that does work go to a pediatric GI ( if you can) and explain your situation. Surely they will test then. I would make sure it is a pediatrician or GI though. Not just some doctor that serves any person that comes off the street.

Well book two is now complete! Please ignore all my mistakes. I too did this on my phone!! &amp;#128516;

Any help at all I don't mind helping. My name is Marti and my email is vagal74@aol.com if you'd like to email instead. Either way is good for me.

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

Skysmom! Thank you so much. Your husbands story really is quite awesome. Amazing infancy that he has no other problems with food. Was he like this from the beginning? I am wondering if he eats the usual gluten-free stuff available or if he adopted a whole foods diet. I am still struggling with bloats and gas and new allergies and ezcema.

Your son Skylar (fantastic name) sounds so grown up. My son Ezri has lots of allergies (nuts, lentils, fruit, peas, eggs) and we have had a nightmare in our house with food. I will be DEVASTATED if he is also celiac. To also contend with gluten at 5 years old. But obviously he need to be healthy... I am just about to move home and will change doctors (looking forward to this!!)... I will get him tested ASAP after we have moved. I will most definitely insist, the NHS here in UK is a waste of space sometimes (depends on if you're lucky to get a good doctor, hit & miss, most ate useless)... So I will go private if need be.
I just want to thank you again, as your story has been invaluable to be, thank you Marti I will email you when I have moved and settled, I'd love to know more about dealing with a celiac child! Also, why did the ped doc scare your son with the cancer thing I wonder? Seems a bit cruel!! It doesn't happen that often (cancer)?
Anyway, speak soon, big hugs and thanks so very much
Kimmy

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

I had total atrophy at dx which had not improved at A YEAR gluten-free. Celiac Doc was stumped. At two years the damage finally stopped getting worse and at three years I finally had an improved marsh scale score - while nit was still in the threes it was improved.

I don't say this to scare you - just remind you that it looks like you have likely already improved - most are all healed within a year - three months for total healing would be very quick - imo and that of my celiac doc.

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

GottaSki, am very glad to hear you are finally starting to heal. Do you have any idea why it's taken so long?? Really interested to know. Where undiagnosed for a long time before? Do you have any other endos coming up or was that a recent one on the marsh scale 3?
I guess 3 months is a lot to ask in terms of complete healing. I'm annoyed I guess that they didn't do what they should have and got me in for an endo within the 2 weeks they promised. Now I don't know how damaged I was to start with... I will have start from now I suppose. When do you think I should repeat an endoscopy to check for healing? Or would I only do that if I continued with gi symptoms?

Do you think that where they stated 'shortening of some villi' that this could mean that some villi are ok (ie not shortened!)... Or am I being optimistic. It's hard really as my follow up appointment is not until April (am I allowed to post derogatory or expletive comments?!)

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

GFinDC... That was really interesting. How do you know so much?! Experience I guess? and tons of reading?! So. It's basically down to immune system. And whatever it is that triggers the response in the first place. I've read that pregnancy and the rotavirus are common, does that seem right?

Do you believe stress could be an indicator of how quickly someone could heal?

And why then if my immune system is 'having a rest' from gluten invasion is it reacting to other things instead (ie other foods) lately that it was never troubled by before?
It's like it doesn't know when to stop?!

Have you been diagnosed long, what was your damage like? Are you better now?

Sorry, I can't help myself, I'd love to take you all out for coffee and gossip! (Except I don't drink caffeine now)... (Oh and I live in the UK!)

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

GottaSki, am very glad to hear you are finally starting to heal. Do you have any idea why it's taken so long?? Really interested to know. Where undiagnosed for a long time before? Do you have any other endos coming up or was that a recent one on the marsh scale 3? I guess 3 months is a lot to ask in terms of complete healing. I'm annoyed I guess that they didn't do what they should have and got me in for an endo within the 2 weeks they promised. Now I don't know how damaged I was to start with... I will have start from now I suppose. When do you think I should repeat an endoscopy to check for healing? Or would I only do that if I continued with gi symptoms?

Do you think that where they stated 'shortening of some villi' that this could mean that some villi are ok (ie not shortened!)... Or am I being optimistic. It's hard really as my follow up appointment is not until April (am I allowed to post derogatory or expletive comments?!)

Thanks gotta ski, and sorry for all my questions

No apologies needed here - we all had many questions similar to yours when newly diagnosed.

We also are all different. For me I went undiagnosed for 43 years - in hindsight I had symptoms all the way back to when solid food was introduced - possibly even when I was on formula - my symptoms became worse over each decade - by my 30s I was in pretty bad shape and at 40 my body was shot.

My Celiac Doc and I were both startled that my first follow up endoscopy at a year gluten-free showed NO improvement - at that point I had had some digestive improvement but all autoimmune type symptoms had worsened.

My most recent endo was last June - even tho it wasn't great news I was pleased that there was finally some improvement.

My celiac doc recommends one follow up endo at a year gluten-free and if removing gluten has brought significant healing he would have stopped there - for me I still have them annually - again I am the exception - not the rule.

Can't remember if you posted your orig antibody tests - I would imagine you will see a significant drop when you have your appt in April.

On my cell so its hard to look back to see if I answered your ?s. - if not Ill post more later.

GFinDC... That was really interesting. How do you know so much?! Experience I guess? and tons of reading?! So. It's basically down to immune system. And whatever it is that triggers the response in the first place. I've read that pregnancy and the rotavirus are common, does that seem right?

Do you believe stress could be an indicator of how quickly someone could heal?

And why then if my immune system is 'having a rest' from gluten invasion is it reacting to other things instead (ie other foods) lately that it was never troubled by before?It's like it doesn't know when to stop?!

Have you been diagnosed long, what was your damage like? Are you better now?

Sorry, I can't help myself, I'd love to take you all out for coffee and gossip! (Except I don't drink caffeine now)... (Oh and I live in the UK!)

Hi DS,

I've went to Google University for 5 years after I was diagnosed. Also read a lot here at celiac com. I didn't have an endoscopy. I also flunked my celiac blood tests, not positive. I had to wait over 3 months for my appointment at UMD and went gluten-free before that. So my tests were not accurate. But Dr. Fasano said it sounded like celiac to him.

There is on firm agreement on with causes celiac disease to kick in. Pregnancy is one possible trigger, as are viral infections and other things. Stress is one of the possible triggers. It basically seems like a situation where they just don't know and make up answers that sound right. It's not an easy thing for figure out as people are diagnosed usually until after they have had celiac for quite a while. I know in my own case I developed more obvious symptoms after an office bug that went around one winter. I became lactose intolerant after that bug. I had some symptoms before that, but never had a problem with lactose until then. People have posted before about celiac symptoms hitting them after a pregnancy. People have also posted about their celiac symptoms going into remission during pregnancy. Those people tend to have lots of rug rats! Kidding But the symptoms always start back up after a little while post rug-rat. Pregnancy affects the immune system and kind of tunes it down a notch, so that makes sense.

My symptoms were bad enough in my own opinion, but others had much worse symptoms. I had mental symptoms, GI symptoms, pale complexion, joint pain, couldn't really sleep at night from the pain in my gut, black stool, and bloody stool, allergy symptoms, gum problems, swollen legs and feet, a cat that wouldn't stop meowing, and other assorted fun stuff. I got better on gluten-free but then ran into other food intolerances that kept me feeling off for the first 4.5 years. Last April/may I stopped eating grapes and that seems to have been the last food intolerance piece of the puzzle for me. I have been feeling better since then. Actually feeling pretty much like a normal person in fact. Darned nice change really.

The other food intolerances popping up after going gluten-free is not real unusual for us. There is a theory that celiacs guts don't function the same as other people's as far as the chemical signalling process for allowing things past the gut blood stream barrier. Dr. Alessio Fasano pioneered the research on that issue and the condition is termed "leaky gut". It seems like leaky gut can cause other food intolerances to develop. If you do a search on it Dr. Fasano's info is the most reliable IMHO. Many people have promoted "cures" and treatments for leaky gut since he discovered it. Just be careful because most of them are probably hoakus.

Well, I hope that answers some of your questions. Living in the UK sounds great. I visited their briefly when I was in the military. Saw some real life castles and stuff. Lovely country!

No apologies needed here - we all had many questions similar to yours when newly diagnosed.

We also are all different. For me I went undiagnosed for 43 years - in hindsight I had symptoms all the way back to when solid food was introduced - possibly even when I was on formula - my symptoms became worse over each decade - by my 30s I was in pretty bad shape and at 40 my body was shot.

My Celiac Doc and I were both startled that my first follow up endoscopy at a year gluten-free showed NO improvement - at that point I had had some digestive improvement but all autoimmune type symptoms had worsened.

My most recent endo was last June - even tho it wasn't great news I was pleased that there was finally some improvement.

My celiac doc recommends one follow up endo at a year gluten-free and if removing gluten has brought significant healing he would have stopped there - for me I still have them annually - again I am the exception - not the rule.

Can't remember if you posted your orig antibody tests - I would imagine you will see a significant drop when you have your appt in April.

On my cell so its hard to look back to see if I answered your ?s. - if not Ill post more later.

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

Wooah, 43 years undiagnosed? That's rough. Is that perhaps why you are taking longer to heal?? You are so positive, actually an inspiration... How did you get through that first endo being told that you hadn't healed. Its my nightmare ( I've become a real pessimist these last few years, prob celiac related). Respect to you, seriously.
So is this why you have cut out so many other foods? If you are intolerant to say soya for example and it gives you gi symptoms... Does this also cause gut damage? Or is it that it doesn't allow the gut to heal because of the inflammation? (I was doing well until Christmas where I somehow lost the plot and started consuming gluten-free kettle chips like crazy! Ok to start with, but then I had a few slices of gluten-free bread, and a few choc mints... Bang! Oooooh my poor guts. Why did I do it. I've undone all my good work. And now have come in random rashes etc. what an idiot eh?) back on my meagre simple diet... Hopefully get back to a happy gut in a few weeks.
Thanks for your posts, and answers, and advice.
One last question. How do you get on with life? As in... How do you let celiac NOT consume life. I'm too paranoid to even go out for a wine with friends. I've become a paranoid food obsessed hermit, stalking the celiac forums, unable to share normal conversation with my nearest and dearest, scouring my kitchen for crumbs, perusing google unsuccessfully for evidence that I'm unlikely to get lymphoma!! I just want to forget it all for a week and not care that my guts hurt, that I can't have nice fatty evil lump of cheese, or a nice cup of tea! Oops, dunno where that came from, ohh the frustration. Aaaaaggghh!

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

Well now GFinDC, must admit you've made me laugh!!! Thank you!
Google university!! I'm there now, it's a tough course! Anyway, you saw Dr Fasano? Thanks for the link btw, I've got major brain ache as I have just spent the last 2 hours reading up on him via my cell, and my eyes are crossed now.
Very verrrry interesting indeed! The pregnancy fits for me, had my son 6 years ago (and 2 miscarriages within 14 months after that), followed by noro virus and a severe bout of rotavirus! This was also a time of quite severe personal stress (not inc the pregnancy thing)... So I guess it could've been that. Just wish I could remember when bread started bothering me.

I'm interested... The cat meowing??!! Totally awesome! Obviously not that you were sick etc but, hey... animals and their senses.
So how long have you been gluten free? This food intolerance thing keeps cropping up, what kind of stuff did you cut out? 4.5 years eh? Did you actually have repeat endo's to know you we're still damaged or not? Or was just that you still felt rough with symptoms?
As for grapes?? How did you get to that one??! Is fruit a common one? Do you drink wine?
I'm so nosey, sorry
So what I'm really very interested in is this leaky gut. Dr F (so far in my 2 hour research) hasn't explained how to heal it! I fell off the wagon for a few days over Christmas (nothing major, chips and a few chocs and a bit gluten-free bread)... I'm now paying the price for it as I've come up in hives and itches etc... I reckon I have leaky gut.
I must unleak this gut of mine. You are right there are many bogus nasty people trying to make a buck from quick fixes.
But what's the truth? Can you heal a leaky gut? Obviously removing gluten is not enough for some of us. What have you done to feel normal? I want to be normal (never thought I'd say that!)
Where are you from GFinDC?
England has some great history, parts of it are beautiful... But the weather is too cold for me (I'm actually British born but half Spanish, half Hungarian and believe that I don't belong in this country having previously lived in the Spanish mountains for 6 years!)

And thank you for your time once again, I can't tell you what it means to have such support. Sincerely.

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

Well now GFinDC, must admit you've made me laugh!!! Thank you!Google university!! I'm there now, it's a tough course! Anyway, you saw Dr Fasano? Thanks for the link btw, I've got major brain ache as I have just spent the last 2 hours reading up on him via my cell, and my eyes are crossed now. Very verrrry interesting indeed! The pregnancy fits for me, had my son 6 years ago (and 2 miscarriages within 14 months after that), followed by noro virus and a severe bout of rotavirus! This was also a time of quite severe personal stress (not inc the pregnancy thing)... So I guess it could've been that. Just wish I could remember when bread started bothering me.

I'm interested... The cat meowing??!! Totally awesome! Obviously not that you were sick etc but, hey... animals and their senses.So how long have you been gluten free? This food intolerance thing keeps cropping up, what kind of stuff did you cut out? 4.5 years eh? Did you actually have repeat endo's to know you we're still damaged or not? Or was just that you still felt rough with symptoms?As for grapes?? How did you get to that one??! Is fruit a common one? Do you drink wine?I'm so nosey, sorry So what I'm really very interested in is this leaky gut. Dr F (so far in my 2 hour research) hasn't explained how to heal it! I fell off the wagon for a few days over Christmas (nothing major, chips and a few chocs and a bit gluten-free bread)... I'm now paying the price for it as I've come up in hives and itches etc... I reckon I have leaky gut.I must unleak this gut of mine. You are right there are many bogus nasty people trying to make a buck from quick fixes.But what's the truth? Can you heal a leaky gut? Obviously removing gluten is not enough for some of us. What have you done to feel normal? I want to be normal (never thought I'd say that!)Where are you from GFinDC?England has some great history, parts of it are beautiful... But the weather is too cold for me (I'm actually British born but half Spanish, half Hungarian and believe that I don't belong in this country having previously lived in the Spanish mountains for 6 years!)

And thank you for your time once again, I can't tell you what it means to have such support. Sincerely.

Hi DS,

I guess we might as well support each other. At least we know what it's like to live with this condition, whereas other people don't. Dr. Fasano has a relation to a company working on a drug to treat leaky gut. It's still in testing I believe. Alba Theraputics.

My food intolerances are listed in my signature. But basically nightshades, dairy and soy plus grapes are the biggies for me. They didn't seem to all hit at once though, but developed over time. Some of them seemed to get much worse over time, like soy. I did a series of elimination diets to find my intolerances. I cut out wine for 4 months a few years ago, but didn't notice any real difference. But I was still eating grapes and raisins. So no wonder, Duh! So last April I cut out all grapes, including wine, raisins, grape jam, grape juice everything. That made a huge improvement for me. Not instantly but over a month or 2. So, no I don't drink wine anymore. It was good while it lasted though!

Muffin, my cat, likes to kneed my stomach when my gut is hurting. I don't know how she knows it, but she does.

My opinion is the best thing is to stick to a whole foods diet for awhile, and see how things go. If things don't improve after 3 to 6 months, then it makes sense to look at other food intolerances. It can take 3 to 6 months for people to learn to eat gluten-free in the first place.

I am in Washington, DC, USA. I came here from Ohio though, another state in the US. Spain would be nice to visit. I made it as close as Portugal once, but didn't get to Spain. My ancesters are Irish, English and German though. With a little American Indian thrown in.

We are having a warm winter here in DC so far. Hardly any snow and not too cold. I think it is close to a record warm winter in fact.